Does anyone have experience with Immu... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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Does anyone have experience with Immunotherapy Atezolizumab?

Seagu11s profile image
Seagu11s

Hi, I was diagnosed with LC stage 4 in Dec and had 3 cycles of Gencarbo which sadly did not have any impact. I have limited options available moving forward apparently as I have nsc squamous type cancer.

Does anyone have experience that they can share with an immunotherapy called Atezolizumab please? I start this as my next treatment option next week.

Wishing you all my best.

16 Replies
RoyCastleHelpline profile image
RoyCastleHelplineAdministrator

Dear Seagu11s

Sorry to hear you have not had a good result with the Gemcarbo and hopefully the Atezolizumab will be more effective for you.

This link from Cancer Research UK provides some information on Atezolizumab: cancerresearchuk.org/about-...

Hope you hear from someone in the forum who has had experience with this and wish you all the very best.

If you would like to discuss anything you can either email us at lungcancerhelp@roycastle.org or call our free phone nurse led helpline number on 0800 358 7200

Kind regards

The Roy Castle Support Team

If you don’t get much of a response here there is an American website called Inspire. It might be worth posting on there too. People from around the world post there

Seagu11s profile image
Seagu11s in reply to Bow-19

Thanks I will see if I can find the site.

Bow-19 profile image
Bow-19 in reply to Seagu11s

Hope you have found it ok?

Seagu11s profile image
Seagu11s in reply to Bow-19

Hi I did indeed. Took a little playing about but by adding cancer into my search string I located it. Thank you.

I have the same type and stage of cancer and had four rounds of carboplatin and Venorelbine but they didn’t stop the further spread. I will start the Atezolizumab on the 21st so I will be following your post. Good luck!

Seagu11s profile image
Seagu11s in reply to Pixiebites

Hi Pixiebites, first treatment cycle was done yesterday. No complications so far but I did feel pretty tired in the evening and also today so have just taken it easy. Might be a result oh me as I hagetting short of breath over the last few weeks following the tumour growing whilst I was on chemo. Hoping this immunotherapy will shrink it down a bit to fix this. Good luck on Wednesday 🤞

Seagu11s profile image
Seagu11s in reply to Seagu11s

Sorry had an issue editing/sending! Might be as a result of me getting short of breath......

Pixiebites profile image
Pixiebites in reply to Seagu11s

Thanks for letting me know. Let’s hope it works for both of us. I will let you know how I get on x

Seagu11s profile image
Seagu11s in reply to Pixiebites

Tip: It took a lot longer to deliver this first dose than expected! Arrived at 10:30 and left just before 3pm.

Pixiebites profile image
Pixiebites in reply to Seagu11s

Blimey! They told me an hour!

Seagu11s profile image
Seagu11s in reply to Pixiebites

Me too but due to the cost of this treatment the pharmacy does not prepare it till you arrive and have spoken with the nurse so take a good book! Giving you the treatment is around an hour and the flush before and after is another 20-30 mins. Might be a different experience for you of course....

Hi thanks for getting in touch. I am sorry that your chemo did not halt the spread. It’s so frustrating. I start the new treatment on the 16th. I so hope things work out for you. All my best.

Hi, I am currently on this type of immunotherapy after having the chemotherapy. I have stage 3c LC in the left lung. The Chemo shrunk the tumours but I was put on immunotherapy only as I cannot have anymore chemo. I am currently on my second cycle and waiting for a scan to see how it's doing.

During the first cycle I did experience bowel problems but my health team quickly put me on steroids which helped enormously within 2 days and I carried on. So far I have not experienced the same problem.

I will keep you updated after I get my scan results if that would help. Sorry I cannot be more specific as it's early days.

Seagu11s profile image
Seagu11s in reply to Goldbell

Thanks for sharing your current experience with me Goldbell. Sadly my chemo did not shrink the tumour - infact the opposite which is why I am keen to hear from others who have experience of this immunotherapy.

Be very grateful to hear your future experiences if you are able to share with me.

Hi - I was diagnosed with S4 NSCLC in Jan 18 in my left lung and had surgery to remove the top part of my lung. I had 4 cycles of carbo/pem and then 20 months free of treatment before some progression in lymph nodes and some suspicious lesions in my hipbone were found. I started Atezolizumab in July 2020 and my last three CT scans are showing all stable. I was told I can have this for up to 2 years and so far so good - about to have cycle 15. I do get very tired but other than that have no side effects. I have had a worsening cough for the last 3 months which the oncologist can’t link to the cancer so that may be another side effect but in these COVID days who knows! Hope all goes well for you.

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